Make families part of the medical team

10 Questions that can lead to better care

Several years ago, while my husband lay in critical condition in an intensive care unit, I watched his intensivist and a group of medical students crowd around a laptop in the corridor outside his room. Occasionally, one would glance in his direction, and then return to the data on the screen.

I thought about a comment once made by a doctor I know who teaches at a large medical school. “When in doubt,” he said, “I tell my students to examine the patient.” His wise words rang in my ear, but I decided to leave them there for the moment and just eavesdrop to learn whatever I could about my husband’s illness.

It wasn’t long before I realized that they were puzzling over my husband’s condition, his complex medical history and gaping holes in the electronic medical record. They needed a lot more information, and I was not hesitant to provide what I could.

With a deep breath, I interrupted their conversation and offered details I thought useful about his medical history. His background was so complicated, I had a brief summary that I carried in my wallet and shared it with them. The doctors seemed hesitant at first to accept my involvement but politely listened to my recounting of my husband’s story. When I finished, they thanked me for the information and admitted it had been helpful.

The next day I was waiting for them when they came rounding. And the day after that too. Before long, I had made myself part of the team. The doctors began to explain things in terms I could understand and to ask me more questions so they could better understand my husband’s medical condition.

A few days later, the attending thought my husband was progressing enough to move him out of the ICU and onto another floor. But I was certain something was still wrong. Based on history and intuition, I was worried about an infection. I insisted on additional tests. The attending appeased me. Results that day proved me wrong. But the next day I was vindicated. There was an infection and good reason to keep him in the ICU a while longer.

The attending graciously acknowledged that I had been right, and we forged an even stronger working relationship, dealing with a series of ups and downs that followed until my husband was truly well enough to leave the ICU. On that day the attending and I parted with a warm hug and an honest appreciation for the separate but important roles we both had played in the patient’s recovery.

Family Matters

That wasn’t the first time I had acted as an advocate for my husband. Over the course of 24 years, he survived 14 separate hospitalizations—some for long stretches and a few for life-threatening conditions.

Once, with the advice and help of a doctor who was a family friend, I sought out a specialist to consult on my husband’s case. There were already numerous specialists on the case. But the new doctor brought a fresh perspective and helped turn around what seemed to be a grim and deteriorating situation. Another time I stepped in, preventing an orderly from taking my husband for an MRI. He has a pacemaker, and I was not about to allow the procedure, no matter what had been ordered.

Over time, I have learned how and when to speak up. Today my husband is thriving, and I believe I have played some part in a number of his recoveries. We have been lucky to have doctors who were willing to listen, accept input and discuss options. My husband is living proof that collaboration between doctors and families improves and enhances patient care.

But in today’s hospitals, building those bonds can be difficult. Patients are more likely to be seen by hospitalists, who barely know them, than by their primary care physicians. Medicare, private insurance and hospital rules all make it difficult for medical professionals to spend enough time to get to know every patient well, especially a new one. Relative value units don’t necessarily help physicians forge close relationships with their patients.

Popular literature is replete with questions for patients to consider. In his 2007 seminal book, How Doctors Think, Jerome Groopman, MD, posed a series of thoughtful questions that patients should ask their doctors, especially in the face of a challenging diagnosis. www.jeromegroopman.com

Equally important are the questions posed by doctors. But many hospital patients are too sick, too weak or just too out of it to provide concise, cogent information about their medical condition and history. And some may be too embarrassed to be completely forthcoming about such issues as incontinence, drug use or memory loss.

Family members can often be more objective and honest, providing background and context that can help doctors better understand their patients. In a hospital, where time is at premium, family members can be valuable links to critical information.

Here are 10 questions that medical professionals most likely ask their patients. But asking family members of hospital patients can help improve diagnoses, treatment and care.

10 Questions to Ask Families

1. Has the patient ever had a medical problem like this before? Is there a family history?

2. What symptoms or problems was the patient experiencing before coming to the hospital?

3. What medical procedures has the patient had in the past five years? Before that?

4. Does the patient have any allergies to medications, food or other substances? What are the signs or symptoms?

5. What medications, including over-the-counter, has the patient been taking?

6. At home, does the patient always take his/her medicine as prescribed? Does he/she sometimes skip or cut doses?

7. Does the patient smoke, have more than two alcoholic drinks a day or use recreational drugs?

8. Has the patient traveled out of the country in the past year, particularly to any developing nations? What about in the past?

9. What type of work does/did the patient do?

10. What are the patient’s plans and goals after leaving the hospital?

Ideally, many of these details are included in the patient’s medical record. But that is not always the case. Information can be incorrect, overlooked or missing. More than once I have had to correct information, particularly about prescription medications, in my husband’s medical record.

Discussion of the issues can shed important new light on the patient’s condition. Skipping medications, travel to Third World countries or occupational exposures can be harbingers of serious, perhaps even difficult-to-diagnose problems. Family members, who know their loved ones better than anyone else, can be fonts of information to help doctors better understand and treat their patients.

“Working with patients and families as advisors at the organizational level is a critical part of patient and family engagement and patient- and family-centered approaches to improving quality and safety,” the guide counsels. “Patient and family advisors are valuable partners in efforts to reduce medical errors and improve the safety and quality of health care.”

Patient-centered care is becoming the norm for many physicians. In a hospital setting, patient-and-family-centered practice can make a critical difference in diagnosis and care, and sometimes even between life and death.

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Last June I was sitting the most terrifying exams of my life to date. The last medical school exams, what we all called our "finals" even though the official line was just "fourth year exams". I felt like the hours of revision, the practical work on wards and in the skills lab, would all be wasted - there was no way I was prepared!
The following 2 or 3 weeks (I forget exactly how long) seemed to drag, my fate hanging over my head like a finely balanced sword. One slight stumble and that was it, four years of medical school wasted. I would have to cut my exchange programme short, I'd have to spend all summer revising, I'd fail the resits, I'd be thrown out. Oh, I may as well give up now - I'm not good enough for this! Melodramatic? Yes. Truly how I felt? Definitely. I spent hours tormenting myself, planning how I'd break the news to my parents, deciding on a backup plan if - or when, as I believed - it all went South. I plumped for TEFL in some far flung, exotic clime where I could forget my old life and pretend it never happened. Definitely well thought out.
On results day I was with a friend, sat on the pavement outside a library in Japan at midnight, nervously waiting for the results to go online. Email notification: technical problems, results released ASAP. Email notification: Results online! Email notification: Passed. Oh thank god, the world is beautiful again. My life plans can go on unchanged. I have passed!
Remembering that time now, I still feel the rush of relief, the overflowing joy, the amazement. It was enough, I was prepared. The hours of worry, the back-up plan, all unnecessary. But will that change my feelings in the future, when I'm waiting for the results of professional exams? Will I be more calm, relaxed, confident even? Oh no, of course I won't. That's just not how it works!

This anecdote happened many years ago when I was a brand new (read: inexperienced) physician doing my stint in the Colonial Health Service of the former Belgian Congo. I was assigned to a small hospital in the interior of the Maniema province.
Soft tissue infections and abscesses were rather common in this tropical climate, but at one time there seemed to be virtual epidemic of abscesses on the buttocks or upper arms. It seemed that patients with these abscesses were all coming from one area of the territory. That seemed rather odd and we started investigating. By way of background let me say that the hospital was also serving several outlying clinics or dispensaries in the territory. Health aides were assigned to a specific dispensary on a periodic basis. Patients would know his schedule and come to the dispensary for their treatments. Now this was the era of “penicillin.”
The natives were convinced that this wonder drug would cure all their ailments, from malaria and dysentery, to headaches, infertility, and impotence. You name it and penicillin was thought to be the cure-all. No wonder they would like to get an injection of penicillin for whatever their ailment was.
As our investigation demonstrated, the particular health aide assigned to the dispensary from where most of the abscesses came, would swipe a vial of penicillin and a bottle of saline from the hospital’s pharmacy on his way out to his assigned dispensary. When he arrived at his dispensary there was usually already a long line of patients waiting with various ailments. He would get out his vial of the “magic” penicillin, show the label to the crowd and pour it in the liter bottle of saline; shake it up and then proceed to give anyone, who paid five Belgian Francs (at that time equivalent to .10 US $), which he pocketed, an injection of the penicillin, now much diluted in the large bottle of physiologic solution. To make matters worse, he used only one syringe and one needle. No wonder there were so many abscesses in the area of injection. Of course we quickly put a stop to that.
Anyone interested in reading more about my experience in Africa and many other areas can download a free e book via Smashwords at: http://www.smashwords.com/books/view/161522 . The title of the book is "Crosscultural Doctoring. On and Off the Beaten Path"

A Recap
Last week in my personal blog I reflected on humility as defined by James Ryle:
God given self-assurance that eliminates the need to prove to others the worth of who you are and the rightness of what you do.
Ryle suggests, from 1 Peter 5:5-7, that central to humbling ourselves is throwing our cares on to God. Every concern, care and fear being hurled on to God who is faithful and powerful enough to handle them. When we know that we are loved by Him no matter what and that He is in control no matter what, then we remove the need to prove ourselves or protect ourselves. We become humble – secure enough to allow God to be in control and to serve others. Once our eyes are lifted from ourselves we are able to see others to love and serve them.
Stafford Hospital
Just before writing the last post I was reading an article about the report by Robert Francis QC on the appalling treatment of patients at Stafford Hospital. One of the recurring comments made by many different people is that the pressure of targets and incentives increasingly displaces focus on compassion and patient care. When doctors, nurses and managers alike are bombarded with ever increasing and regularly changes hoops to jump through and targets to meet, no wonder their attention and efforts are dragged from patient care.
I’ve seen something of the effects of this in a family member who for many years worked as a Health Visitor. In their decades of service they saw an ever increasing and ever changing string of targets and goals alongside cost cutting moves that stripped resources and personnel. Their desire to be compassionate and offer the best care possible became more and more stressful until it finally proved too much. She recently changed jobs.
Now I’m not trying to attack the NHS and I am well aware that so many people receive great care. But this is not a new concern that is being bandied around with fresh vigour in the light of Stafford Hospital. What struck me is that it demonstrates on an institutional level what also seems true at a personal level. Namely, that when we are forced to operate from a place of insecurity we begin to miss the most important things. NHS services have to meet targets to receive funding to simply keep operating – there will be no patient care if there is no hospital. Oftentimes, especially as a leader, we can live with a sense that, unless we meet expectations or make people like us or recognise our worth, then we’ll have no influence to do any of the things we know we are called to do.
The secret of personal humility is to recognise that we are already loved by our Father before we even move our finger; to recognise that He is control and we can throw every care on Him. A person who can live from that place of security finds, free from the need to prove themselves or their actions, can begin to simply do what they are made and called to do. They are no longer pulled in different directions by a multiplicity of cares. What about an institution?
It strikes me that a similar solution is needed for the NHS. Is there a way to give security for doctors, nurses and caring professionals so that they are able to do what they are called to do without constantly watching their back? Obviously there is a need for accountability for the safety of patients and to ensure a good standard of care, but the constant need to prove worth and achievement cannot be helpful for those who are called to compassionate care.
I’m not a healthcare professional. I don’t know exactly what this would look like. But I recognise in the diagnosis of struggles in the NHS, God’s diagnosis of struggles in many people’s lives. The way He designed us to live with Him is often a good basis to begin to imagine a new way for every level of society to function.
So, my question is this: what would a humble NHS look like? To whom could a National Health Service throw it’s concerns and cares?